December 27, 2012

And now I remember why I do not like drugs! 

Over the past two days I have been totally out of it due to the fact that I had not been monitoring my new painkiller medication properly. Ends up that I was taking way too many because I could not remember whether I'd taken them are not. So after taking too many two nights ago I ended up so weak and out of it that I could not get off the floor in the computer room. My body was filled with total weakness as well as too many drugs I'm sure. So from 3:00 AM until around 8:00 AM I just laid on the floor sleeping until someone arrived. Yes I probably should have utilized my life alert button but I didn't think I was in any harm by laying there anyway.

I'm feeling somewhat better today, well enough to be on my own right now but still feel weakness. As long as I take it slow I will be OK. I've never had such a horrible feeling in my entire life...  Laying there feeling so helpless with not even enough energy to get myself off the floor. My family was obviously quite worried so Karen spent the night here last night and Shirley and Morris have been popping in and out.

So going forward I will be putting my pain medication into a separate pill bottle and monitor usage from there. Never do I want to go through that again!

So yes that is why I've been unavailable for the past couple of days and I apologize for not replying to anybody.  I'm using a mobility scooter to get around the house now. It is much easier on my strength and trying to walk back and forth all the time. Things seem to be getting slowly more and more difficult but I will continue to plug away as best I can with what I can. Thank goodness for this voice recognition program or I feel I would be out of touch with the whole world since my left side is totally useless now. If if you want to contact me, the best methods are either e-mail or MSN messenger or Facebook. I cannot do long text messages anymore. (and I don't have a voice recognition program set up for text messaging yet)

Thank you

Ed

December 24 2012 MRI follow-up appointment

Received the results today from Friday's MRI. The results were not good. The Tumour is still growing and the Avastin unfortunately in my case, is not doing its job. Sadly it seems to be having the opposite effect. Worsening my left side which would continue if I remained taking it. Therefore any future infusions have been canceled and we're going to attempt at yet another drug this one in pill form again for 30 days. This drug is normally use in breast cancer patients but a much lower dosage.  Apparently there have been some success stories using this drug at a higher dosage for brain tumors. We have no clue if this will have any effect but again, I will exhaust every avenue available.  The drug is called Tamoxifen Citrate.

I have a month now to digest this information and determine my next step. The trust fund money will  go toward my next option...  Whether that be here in Canada, the U.S. of A or elsewhere. My oncologist said that if the tumor continues to grow at this rate I can expect to see some major regression in a couple of months. When asked about that he said that I would probably require a lot more care in the home, if I can even still live alone that is.

So all in all, it hasn't been a very fun day but I'm still here today and that's what matters as it allows me to plan for tomorrow to fight another day. Will still try to remain in the Christmas spirit for the sake of my daughter and family. My poor head is pounding right now, undoubtedly from the never ending curve ball that keeps coming my way.

I just wanted to let you all know the gist of what transpired today and I think I need a little rest right now. If I think of anything else I forgot to tell you, I will update at point. Right now I need to recharge my batteries and prepare to face another day.

If I don't get back to the blog before tomorrow, please know that I wish you all very merry Christmas and a healthy, happy and joyous 2013.

Sincerely,

Ed McDade

December 22 2012

Well what a horrible few past days these have been. Without looking back on previous posts to remember what I've told you or not....  Here it is. Over the past while my headaches have gotten increasingly more severe to the point where I cannot even consider moving from point A to point B until the Tylenol kicked in when I wake up in the morning. I would have to sit still for almost an hour before I could do anything. Today it's got to the point where I resigned to letting my sister call my family Dr. At home to see what he could do to save me from going to emerg. So as of now I'm on Hydromorephone which finally is giving me some relief from the 24/7 pain. I have always refused a stronger painkiller in the past but it got to the point where enough was enough.

We had our family Christmas today but unfortunately I was bedridden for most of it. I think the rest of the family had a good time though and they're all understanding of my situation. My relatives came down from Burlington which was nice and I think this was the first time we have had so many of us together all at once.

As for the hand and foot syndrome, that seems to be getting a little better also. There was a point where I could not even walk for more than a few steps without excruciating pain on the soles of my feet. Yes I know...  I'm beginning to whine. Still experiencing total body weakness. It's difficult to even get up out of the chair. Not sure of the root cause of this but I'm sure Monday's MRI results should tell me a lot of answers as to what is going on in my noodle.

Had to restart my antibiotics because my nurse noticed more signs of infection over the past while. Could that have been the cause of the headaches? Who knows....  All unanswered questions until Monday I guess. I find myself getting very agitated easily lately. Undoubtedly due to the fact they doubled my steroid. Please do not take it personally at all. Just another lovely side effect of the drugs that I have to deal with.  Thank you all for understanding. I should be able to squeeze in one more post before Christmas so I will save my well wishes until then.

Sincerely

Ed 

December 15 2012

Hello everyone.... 

Just a quick update since my last post. I feel the headache issue is two fold. The infection seems to be clearing up with the help of two antibiotics but I'm still experiencing daily headaches...  But not as extreme. I personally feel this may be Tumour related due to the growth and swelling. But for now I will just have to play the waiting game until December 24 when I get the results from the MRI on December 21.

Started the double dosage of DEXAMETHASONE a few days ago and already my sleep pattern has got even worse. I think I have had 2 hours sleep tonight with not much reprieve in sight since I have Faith this weekend. No big deal though....  I will sleep through the week....  Maybe. lol

Since my left side has become pretty much useless now, I have been going to physiotherapy just to have them manipulate my muscles to prevent as much atrophy as possible. This was going great until I receive a letter in the mail the other day stipulating that since I have a chronic condition, they feel that an adequate time in visits have been allowed and that an in home exercise program to maintain function and range of motion should be adequate enough. This mail was sent by my private insurance carrier. I wonder if there is anything that they do cover in my plan? ??  How nice of them!  I guess I will look for something else affordable because I do not want all my muscle groups on the left side to seize up any further. I've already noticed decreased muscle mass and lost over 75% mobility in my left side.

Myself and some of my family members are leaving on January 10 for a one week vacation in Mexico. I think we all truly need a break from cancer. It not only affects me, but those close to me also. Faith is over the Moon about going to Mexico and I can't wait to see the excitement in her face when we actually get there. She is my reason for being.....  And I want to give her a little boost in January to allow her to continue to fight the fight right alongside her daddy.


Thanks for listening and enjoy your weekend

Ed

DECEMBER 12, 2012 THE HEADACHE SAGA

 Now that I've absorbed about as much of the information that I've received over the past couple of days I feel I can share with you all now. On Sunday November 9th, I spent about 6 hours in the emergency department of our local hospital due to my headaches getting intolerable. I have a quite high tolerance of pain but this was getting to be too much. Long story short, after blood samples, culture swabs and a cat scan, it was determined that I undoubtedly have an infection in the open holes on my head. These are the two dime sized holes that have never healed because of the constant influx of chemotherapy and surgeries I've been through over the past few years.  Because of my compromised immune system, I am always at high risk of infection and sickness. So was this the cause of my headaches????? 

Well, at this point they don't know because unfortunately when they did the cat scan on Sunday and sent it to London for analysis, it was returned shortly thereafter saying that my deepest tumor has grown since the last MRI on September 28, 2012. The previous dimensions were 4.6 x 1.9 cm and as of Sunday the dimensions were 5.7 x 2.4cm. There was also increased edema/swelling around the Tumour mass.  This would explain the increased weakness and lack of mobility in my left arm and leg lately. So in a nutshell, what does all this mean.....................................?

I talked with my oncologist this morning (via his primary nurse of course) and the only advice I was given was to double my dosage of DEXAMETHASONE to help decrease the swelling around the brain. DEXAMETHASONE is the steroid that I have been taking for quite a period of time now. As you know from previous posts, the side effects for me are sleeplessness and increased appetite. And now they want me to double my dosage from 4 mg to 8 mg daily. There are also the number of long term nasty side effects that accompany this drug. I can't seem to win lately!!! At the end of it all I guess I just have to weigh the pros and cons of it and go from there. 

Unfortunately we never had a baseline MRI at the beginning of my Avastin treatments for reference. That would have helped because we would have known the size of the Tumour at the time of the first infusion and would also be able to track the progress of the Tumour and drug going forward. The question in my mind is has the Tumour grown larger than its current dimensions and is the Avastin working on stabilizing it or with any luck, shrinking it???????? I guess I won't know those results until after my scheduled MRI on December 21 with results day being Christmas Eve.

While this news really sucks, I am still hopeful the Avastin monkeys are doing their job inside my brain.  lol 

I go for my third Avastin treatment tomorrow morning. This infusion should only take 30 minutes since I have tolerated the first two with no immediate side effects while being infused. See.....  There is a bit of sunshine in every dark cloud  ;)  If if there is anything newsworthy after much treatment tomorrow, I will update this website. Not much else to say this point except.....CANCER SUX

Ed

December 8 2012

A quick update from yesterday's visit to the London regional cancer clinic....  My oncologist feels that the constant headaches I've been experiencing over the past few weeks are probably being caused by the fact that I have been off of my antibiotics to control infection in the open wounds on the top of my head.  I know it sounds trivial when I talk about this but remember these open wounds (currently 2 of them with a third on its way) are about the size of a dime and go right to my skull. You can actually see some of the hardware as well as my skull when my bandage is removed.

Needless to say with a compromised immune system already, I am at high risk for infection in any open wound as well as risking sickness, especially this time of year when there are so many viruses going around. Next Wednesday I will return to see the plastic surgeon at University Hospital in London and we will see if he thinks that it is infection also. The other two possibilities are that there is tumor growth or that this is yet another side effect of the Avastin drug that I'm currently taking.  To rule these out, I have a scheduled MRI on December 21 and I will ask the question at my next Avastin appointment this coming Tuesday December 11. My oncologist asked if I wanted the results of my MRI before or after Christmas.....  I told them the sooner the better. Historically, the usual one week waiting period between the actual MRI and getting the results is a very high stress time for me. So when given the option of getting the results earlier I jumped on it. I will get the results on Christmas Eve day now.

My head has healed up quite nicely since my fall a couple of weeks back. I no longer look like Rocky but I probably still sound like him with the hoarse voice side effect going on from the Avastin.  lol   Touch wood, the only side effects I still seem to be experiencing are increased fatigue and tiredness as well as the hoarse voice. Other than that, physically, my left side continues to weaken it seems. I'm at the point where I may as well cut my left arm off since it is absolutely useless to me now. It's a difficult adjustment trying to do everything with my right hand now when I've gone through life being left handed. Simple everyday tasks are not so easy anymore but I will adjust and overcome.  Still getting edema (swelling) in my left hand and foot, undoubtedly due to lack of use now. My sleep pattern still is not great because I'm still on the steroid for brain swelling and my oncologist does not want to change that at the moment. So I sleep for 3 to 4 hours a night but am now able to nap through the day it seems a little more. I'm thinking that is due to the Avastin.

My walking is getting a little more difficult as well. I find at the moment I'm walking on the side of my left foot a lot more because the botox injections that I normally receive every three months in my leg have wore off. Since there is no brain/muscle communication going on, my left foot is very stiff and in an awkward position. The botox injections relax the muscle groups in that area for a period of time and allow my left foot to begin a somewhat normal position to assist in walking etc. At the end of the day, I could truly use botox injections right now, but my scheduled appointment is not until January 25. They have put me on a cancellation list so I hope that I can get in to Parkwood Hospital prior to that date.

On to some more upbeat news................

Yesterday we booked a trip to Mexico in January. Faith, myself, mom and dad, my nephew Darren as well as two of my sisters are going. I'm more than ready for a week of not having to think about anything other than how much sun tan lotion should I apply today! Faith is truly excited about going and I think having her cousin there will be beneficial for her as well as me. I cross my fingers every morning when I wake up praying that my health stays stable for this trip because honestly, things could change at the drop of a hat and everyone needs to be aware of that fact.

With the help of my best friend Al Vigar and his son Mat, we were able to put together a You Tube video of my personal story over the past five years of living with cancer. If you search YOU TUBE, search under Ed McDade cancer sux  and that should take you to the video. The video is approximately 50+ minutes long so bring your popcorn and soda!  Please share it with your family and friends because the more views it gets, the more the word will be out there in regards to our provincial gov't not funding the Avastin drug at the current time for brain Tumour patients.  We are still advocating this issue with the government via emails and online petitions that can be accessed on Facebook. Search for the group Dianne Bell-re: Avastin and you should be able to access all the information from there.

The continued support I've received has been absolutely amazing. Never in my wildest dreams did I think I had so many people who truly cared. My Cami family, has gone over the top with their continued generosity on a daily basis. A big thank you goes out to all of my volunteer team who made the Celebration of Ed fund raising event such a huge success and put it all together within a three week time frame. Absolutely amazing! There are probably a million other people that I should be thanking so forgive me in advance if I have not (or a member of my volunteer team) contacted you yet. So I guess as kind of a blanket statement, I would just like to thank each and every one of you who has supported me in any and all ways. I am ever so grateful for everything you have done. I would also like to thank my family for being there for me, especially lately now that I seem to require more assistance in everyday living. You help me more than you know and I truly appreciate everything you do. Everything from helping with some of the household tasks I can't accomplish anymore to stringing my outside Christmas lights so that faith and I may enjoy them, as well as numerous other things.

OK so what else is going on in Ed's life..............  Unfortunately I still get daily nurse visits to attend to my head wounds etc. As much as I know this is a good thing, it is also a pain in the butt. Don't get me wrong, they are a good team and truly help me out, especially now that some days I even have to have them help me dress if I have to go for an appt after their visit. Yet another task that has become more difficult for me to accomplish lately and I guess I just have to suck it up and accept the help and put my pride and Scottish stubbornness aside.

Wow, I was just looking at how many people have viewed my blog since I began this journey.....  31,294 times.  The you tube video has had over 400 hits already as well. While on the topic of the video, I would also like to mention that part of the reason for it coming to life is because I was approached by two wonderful high school girls, Myranda and Brittany from Central Elgin Collegiate Institute, here in St Thomas by e-mail one day asking if they could support me in any way as part of their leadership course they were enrolled in at school. They have helped with fund raising, the video idea as well as providing information to the schools and community regarding my situation. Thank you girls!

Before I forget, I would also like to thank the media for their coverage of all that has transpired over the past while. This includes the St. Thomas Times Journal, the Weekly News, St Thomas Rogers, London Rogers ( there is a video online on their website called  Newsmakers, which we did a discussion panel type of interview with that was a aired last week), the St. Thomas Blog, the Brantford Expositor, the London Free Press, CTV News London, 94.1 MyFM radio as well as others who have unfortunately escaped my chemotherapy riddled mind at this time. Just please know that you all have my gratitude. 

Must take a break now and get ready for my nurse visit. I shall return with more drivel to bore you with.

OK nurse visit is over. In closing I would just like to share a story that was forwarded to me by a fellow cancer survivor. Story revolves around the lupus disease but could be replaced with any life threatening illness or disease people are facing such as myself. I hope you can walk away from it with a better understanding of how we live day to day with only a limited amount of spoons. You'll understand the spoon comment after you read the story.

The Spoon Theory

 

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

My thoughts, prayers and well wishes go out to all those fighting this cancer demon at the moment and especially those close to home such as Barry, Chuck and young Kendra.

Yikes, this was a pretty long winded post but thank you for reading it.

Take care and enjoy your weekend

 

Sincerely,

Ed